First – here is the video of Emma’s and my presentation at the ICare4Autism Conference on July 2nd in New York City – “My Body Does Not Obey My Mind”.
Emma ended our presentation by singing one of her favorite songs, You’ll never see me again. We uploaded this separately and changed it from “public” to “unlisted” as someone has already given her singing performance a “thumbs down”. As with anything that is “public” on the internet, one can expect to get those who are so troubled and filled with self-loathing they cannot control their wish to hurt others.
We may make a new video that includes both the presentation and her singing. At which point we will remove this video of just her singing performance so that only those who watch the full presentation will be able to watch her singing at the end, but have not done so yet. In the meantime here it is, though this link may only work until we’ve made the new video.
As Richard edited the video of our presentation I became uncomfortably aware of how, in my desire to amplify Emma’s voice, I tried to keep her from applauding and kept trying to read her words over the applause. This presentation was the first full length presentation we’ve done together, so there were a couple of things I will be sure not to repeat next time. In addition to my issues, the font size needed to be about 30 times larger for such a big room and the activated voice needed to be miked and next time you can be sure I will be applauding Emma right along with the audience, waiting until the applause died down before attempting to read her words.
This morning I was reminded of how Emma, when asked, “How old are you?” will, without hesitation and in a matter-of-fact voice, say, “Nine.” If I give her the keyboard she will then type, “I am 12.” When I asked her to talk about what it was like to say something, knowing it wasn’t “correct.” She wrote, “Hearing myself say words that cause confused reactions, solidifying doubt, makes people befuddled and causes me anxiety.”
I asked Emma if she was willing to say more. She wrote, “The words are not friendly when they march purposefully from my mouth, ignoring my brain’s direct orders, like obstinate and unruly toddlers defying all. Words pouring forth like water after a dam break, do not pay attention to me. I am so used to it I no longer fight. I dread the smiling talkers who insist on spoken language as proof of being and serious thought. Humor and a reminder to not take themselves so seriously is my loving suggestion for all.”
I asked Emma why she chose this image for today’s blog post. She wrote, “I was so happy riding the horse and this post makes me happy too!”
Posted in Autism, icare4autism, Parenting
Tagged autism conference, autistic, body/mind, body/mind disconnect, communication, conference, language, non-speaking, presentation, presume competence, public speaking, Rapid Prompting Method, RPM, speaking, Speech, unreliable speech, video, writing
Emma and I are speaking at the upcoming icare4autism conference here in New York City, July 2nd. Over the weekend I asked Emma what she thought the topic of our talk should be. She wrote, “Let’s talk about mind/body disconnect and how that makes people misunderstand someone like me…”
I told her I thought this was an excellent topic particularly as this conference will most likely not have an audience familiar with the idea of there being a mind/body disconnect or if they are, what that actually means. In fact this is one of those topics I wish I’d known about from the beginning. It would have been so helpful had someone explained to me, when Emma was diagnosed, what it meant. Perhaps more than anything it is the body/mind disconnect that caused me to make all kinds of assumptions about my daughter, which I now know were incorrect. Because she did not look at me or turn her head toward me when I spoke to her, I assumed she wasn’t listening. Because she said things that I couldn’t understand or were disconnected from my questions, I assumed she didn’t understand the question. I believed the words she spoke were the words she intended and meant. It didn’t occur to me that I was wrong. It didn’t occur to me that she was thinking a great many things, but had no way of communicating all that she knew and thought.
Both Ido Kedar and Naoki Higashida talk about how their bodies do not do as their brain requests. Tracy Kedar, Ido’s mom, writes in the introduction to Ido’s book, Ido in Autismland, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts. You want to speak and you know what you want to say, but either you can’t get words out, or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times. Imagine your face staying flat and blank when inside you are furious, sad, or wanting to smile in greeting.” Later Tracy writes, “Since you cannot express your thoughts, only you know that you are intellectually intact.” And still later Tracy writes, “Imagine being stuck in an educational program, year after year, that is designed for a preschooler who learns slowly. You are bored, frustrated, angry, misunderstood and more than a little hopeless.”
Emma has written about some of this before, but in the next month will be writing about her experience with the “mind/body disconnect” more. I will be reading her thoughts and insights at the conference and adding my experience of what I once believed. Emma will then answer questions from the audience time permitting, by writing on her keyboard.
I asked Emma what she wanted to call our presentation. She wrote, “Let’s call it – Rethinking Your Beliefs About Autism”
And so we are…
Posted in Autism, communication, icare4autism
Tagged autism conference, autistic, communication, icare4autism conference, Ido in Autismland, Ido Kedar, intelligence, mind/body disconnect, Naoki Higashida, New York City, Parenting, presume competence, The Reason I Jump, writing
Peyton Goddard gave the keynote address at the 2013 TASH Conference in Chicago on December 11th, 2013.
You can watch, hear and read a transcript of her speech ‘here‘. Peyton does not speak, but instead types to communicate. I was fortunate enough to be in attendance at the TASH Conference and hear her speech.
“Understated and devalued, I was segregated and secluded, walled-in for controlling decades, and repeatedly traumatized by bullying abusers.”
Peyton describes her existence prior to learning how to communicate through typing.
“I’m less. I’m freak. I’m throwaway trash. Daily, for decades, I try but cannot be the person you want me to be.”
“Your answer was to fix me, to change me to be what you feared not. To cure me of being ME. I reply that YOU were less than I needed.”
Read that again – “I reply that YOU were less than I needed.”
“Segregation is the beast whose bite cheats us all. The isolation of people different renders you and me strangers. Reality is that you are me and I am you.”
At the crux of any prejudice is the idea that “I” am different, separate and, ultimately “superior”. To live with this delusion, we must keep ourselves apart from those we believe “inferior”. If we live together, in a world that embraces all humans, we lose our superior/inferior status. This is the world I strive and hope for. This is the world I want my children to inhabit.
*For more of Peyton’s wisdom, read her book, I am intelligent. I interviewed Peyton and Dianne for the Huffington Post. You can read that interview ‘here‘.
Peyton and Dianne Goddard ~ TASH 2013
Posted in Autism, communication, non-speaking
Tagged Autism, autism conference, communication, Dianne Goddard, Equal Rights, human rights, i am intelligent, Keynote address, non-speaking, Peyton Goddard, prejudice, TASH, TASH 2013, TASH Conference